Right now, we are trying a medication called Topamax, which is an anti-seizure medication given orally. We "sprinkle" the capsules into some applesauce twice a day. We have increased his dose gradually, and yesterday he finally reached the target dose. Unfortunately, as was expected, we have noticed no improvement in his spasms Thus, we are trying to prepare ourselves for what lies ahead.
If we do not see any improvement in the spasms from the Topamax, Will is going to be admitted at the Clinic for a PET scan, 24 hour EEG study, and a spinal tap. At that time he will begin a hormone injection treatment called ACTH. After his initial hospitalization, Dan and I will have to give him daily injections of the ACTH, and he will need to have regular blood pressure checks, as well as blood and urine draws to make sure he is tolerating the medication. If it works, the Dr. estimated the course of treatment will be approximately 5 months, if it does not, he will be gradually weaned off over a period of about 2 months and we will be on to the next medication.
We are terrified of the ACTH, although we are somewhat terrified of just about everything to do with this right now. ACTH has some very bad side effects, including significant weight gain, suppressed immune system, and moodiness. His doctors are "not optimistic" that it will work, however, they said that we owe it to Will to try so that is what we are going to do.
We are having an extremely difficult time coping with all of this. As parents, it is devastating to us to know that there is something terribly wrong with our son and yet there is nothing that we can do to make it better. No amount of kisses will cure him, although I can assure you that he is getting plenty.